@Gilles,

> non-participation should not be forced on anyone

Brilliantly said. That’s a “forever” quotable.

A non-paternalistic healthcare system naturally accepts that patient-centered medicine really means that the patient is at the center of it all, (including in shared decision making). In such a system, how much participation is acceptable becomes a moot point. The patient decides. This system accepts active participation as default and can easily scale back to ANY mix of participation and non-participation.

The reverse system, the old paternalistic model that refuses to go away, obviously lacks the flexibility to fully accept and integrate active engagement of the patient as main decision maker. That’s why so many wrong decisions are made at every level of the system. Until the “Industrial Age” medical system is replaced by the one generated by “Network Age”, this nation will not be able to get a handle of runaway medical costs.

> the opportunity for patients to decide just how participatory they want to be

And I think the whole point here is that it’s outdated for clinicians to be making that decision.

Years ago the domain of Shared Decision Making acquired research showing that doctors don’t do a reliable job of estimating what treatment their patients would choose if fully informed. Years later, this winter the Open Notes project documented that in the baseline survey at start of the project, physicians were waaaay off in estimating what their patients would want re their records …. docs mostly said patients wouldn’t want the info, and patients actually were 90% for it.

It doesn’t matter why this is. I just know, for heaven’s sake, let’s improve healthcare by (for one thing) asking patients what THEY think is important.

What we need, however, is the opportunity for patients to decide just how participatory they want to be — a lot, a little, not at all. Giving you your medical records after 30 days makes the decision for you. Working in partnership with your physician and respecting his/her clinical experience is great. In some cases, there needs to be a bit of work for that respect to go in both directions.

Consider teh following scenario:

75 y/o husband and wife come for a follow-up exam, the husband had a recent biopsy showing grade 3 lymphoma. Here’s what happens under a “collaborative” model:

Doctor: we have chemo protocols A, B, C, and D which are successful in X, Y, Z% of patients with side effects #1-#10. Or we can do a combination of radiation + chemo which comes in 5 different flavors, is successful in X, Y,Z% of cases with side effects #11-#20. Oh by the way, we also have to define what ‘successful’ means, so lets talk about 5 year survival rates, 5 year morbidity rates, etc. Here’s your menu of options, here’s a stack of paperwork to read, you guys think it over for a few days and then let me know which option you want to pick.

I submit to you that’s not ideal for every clinical encounter.

Sometimes patients do better in the “paternal” model where you say “there are a lot of options out there, but in my professional medical opinion the best option is X, for these reasons.”

I truly believe that transparency is and will continue to be the most powerful tool we have to getting to safer, high-quality, patient-centered care.

Whether it’s transparency with our medical records, patient care outcomes, research, or costs…..it levels the playing field by giving consumers/patients what they need most: information and knowledge.

This is how to empower patients. This is what will drive improvement from the outside-in. This is what will give patients the power they deserve to be captain of their own health care team (credit and thanks to Mary Brennan- Taylor for the analogy).

Poor patients. They don’t understand medicine. We’ll let them know when there’s something they need to know.

The only path toward de-calcification is exactly what Regina and the e-patient movement is all about: creating a two-way collaborative relationship between healthcare and its customers – a/k/a patients – that will drive better health for both sides.

To accomplish that, we’ll have to take advantage of every teachable moment. Patients need to educate healthcare on how to collaborate with us.

Dr. Motew’s confusion (indicated above) makes it clear we can’t trust the policy wonks to come up with rules that make collaboration possible. So the policy wonks need to listen to patients, too.

Onward.